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Wildly wondering about life

Celebrating

Have you ever been having a conversation with somebody about nothing special when all of the sudden a simple statement seems very profound. Recently, a friend mentioned that they had another friend who had a child with severe medical problems. They said something to the effect of, “it really changed them”. It seems obvious right? Once you hold your child while they convulse and turn blue it does change you. For whatever reason, this statement sat with me in a very profound way. I have changed. Whether I like it or not, rett has changed me. I don’t know that I am a better person for it, but I know pain and darkness on a whole new level that I had never conceived of. I now understand why there are statistics with 85-90 percent divorce rates within the special needs community. It is hard to love while you are being changed. It is hard to be loved when you are reeling from traumatic events that involve your child. As I look back I can clearly see a correlation between some of the hardest things that we had to deal with for Claire and the most troubling times in our marriage. Sure, in the moment of crisis we pull together to make it through but the moment that the adrenaline wears off and the emotions start to emerge things can get ugly fast. For us it was the two years following the regression. We joke now that we didn’t want to so much get divorced as kill each other. We both dealt with all of the stuff differently and we were too exhausted to be able to think that through, it was a very hard two years. Over the last few months I have connected with a few of you out there that are in the more recently diagnosed category. I just wanted to put this story out there, in the hopes that it might encourage you. There is no way to train or prepare to go through the crazy that rett syndrome takes you through. If you find yourself falling apart, in the dark, hold on. Give yourself the space to fall apart and put some people around you to help pick up the pieces. For us it has been grief/marriage counseling for nearly three years. It took the first year before everything fully unraveled but it did. This past weekend we sat down and celebrated the adventures of Captain Awesome and Miss Amazing. We have both emerged, for lack of a better term, from the throws of the grief and darkness that overshadowed our life. We have been changed and are able to live a life where love can coexist with the pain of holding a child that has turned blue and is fighting to come back. We are ever more grateful for each day and the joys that are within it. We have found that there is so much to celebrate when you come back to the surface. Today our marriage is stronger than ever, our bond closer. We honestly can’t believe just how good things are, it been one heck of a comeback. Great comebacks deserve celebrating, so for now, that is what we are doing. Since I am a food geek I will share a pic with you, nothing says celebration to me like good cheese, fresh crab and champagne.

4 thoughts on “Celebrating”

First let me say, the feast in the pic looks mouthwatering and Im wholly jealous :). I really appreciated this post, congrats two both of you, and all of you, on making it through together. Its very true the things you say about marriage with the surprise of a child with special needs. Most of us think we went above and beyond pre-marriage by hammering out compatibility on subjects like how to raise our kids, how to deal with family, religion, politics etc. No where in per-marital counseling did anyone ever consider “What will you do, how will you change your lifestyle, and how would you WANT live and raise your child should he/she be born or become disabled?”And really, with today's statistics, it SHOULD be addressed prior to getting hitched. Not that one fully knows who he/she will evolve into should fate deal those cards. Or how ever you want to look at it. The difference between me and my ex on these issues became unbearable. But we both agree, 10 years later, that not letting Joshua's disability define who he is, or who we are, is critical to everyone's happiness in our now separate families. We are so much more than disability and disease. So HUGE Kudos too both of you for finding your path TOGETHER. And we are here if you guys want a date night out someday, seriously! Go get a beer and make out at the Red Room 🙂 You deserve it.

Being one of the newbies to this situation…your post was so uplifting! We have had to find a way to grieve, seperately which can be tricky. And it's not like the grieving just lasts a couple days or weeks and then there's light. We're realizing this is a long road but now finding ways to come together to talk about things. I'm so glad you took the time to celebrate and enjoyed every minute : )

Thanks for posting this Colleen – it's a great insight. And a very under-discussed issue, the impact of a disabled child on relationships – everyone knows it causes stress, but why/how it has such an effect isn't really talked about enough. xx